Freedom to Adhere:
The complex relationship between democracy,
wealth disparity, social capital and HIV
medication adherence in adults living with HIV
J. Craig Phillips, PhD, LLM, RN, ARNP
Freedom to adhere
Background
Structural challenges that impede Human
Rights approaches to managing HIV
• National level democracy rankings
• HIV criminalization
• Wealth disparity
• Social capital
Limited evidence of relationship between
structural challenges and health promoting
behavior
Freedom to adhere
Theoretical framework
Ecosocial Theory
• Postulates that for every intervention or policy their
is near simultaneous and reciprocal effects across
social environmental levels of influence
• Requires dialog among ALL stakeholders to develop
solutions
Social Epidemiology Methods
• Allows for a more balanced approach to explain
contextual features of disease states observed in
human populations
• Combines multiple sources of evidence not just
health sector related
Freedom to adhere
Research Aims
Among an international sample of PLHIV
1. Determine if there are observable effects between the
social structural factors of democracy, HIV
criminalization, wealth disparity, perceived social
capital and individual ART adherence
2. Describe the nature of associations observed between
social structural factors of democracy, HIV
criminalization, wealth disparity, perceived social
capital and individual ART adherence
3. Make recommendations for policy, practice , and
research to address structural factors influencing
adherence in an ecosocial context of HIV
Freedom to adhere
Methods
Cross-sectional survey of PLHIV from
August, 2009 to January, 2012
Convenience sample of adult PLHIV
recruited from infectious disease
clinics and AIDS Service Organizations
Protocol approved by coordinating site
at UCSF and local sites
Data analysis included
• Descriptive statistics
• Correlational analysis
• Regression analysis
Freedom to adhere
Results–Sample Surveyed
2,182 PLHIV at 16 sites in 5 countries and Puerto Rico
École des sciences infirmières
School of Nursing
Freedom to adhere
Results–Sample Characteristics
Selected Demographics
HIV Disease Indicators
Freq (%)
Age (years)
Mean (SD)
45.1 (±9.5)
Gender
Male
Female
Transgender/Other
Freq (%)
Years since HIV diagnosis
Prescribed ART
1486 (68.7)
623 (28.8)
54 (2.4)
Ancestry (Race/Ethnicity)
African Am/Black
854 (39.6)
Latina/Latino
425 (19.7)
White
488 (22.6)
Other
389 (17.8)
Education
Has AIDS diagnosis
Undetectable Viral Load
14 (±7.6)
1775 (83.5)
942 (44.4)
1034 (51.8)
Viral Load (N mean)
20,930
(± 79,297)
HIV transmission method
Sex HIV+ man
1458 (73.3)
Sex HIV+ woman
521 (29.9)
11th grade or less
601 (27.8)
Sharing needles
508 (29)
High School
804 (37.2)
Blood transfusion
180 (10.9)
2+ yrs College
759 (34.2)
Don’t know
185 (12.3)
Income Adequate
472 (22)
Mean (SD)
Freedom to adhere
Research Aims 1 & 2: Evidence
Studied 4 explanatory and 1outcome variables to:
1. Determine if there are observable effects between
social structural factors of democracy, HIV
criminalization, wealth disparity, perceived social
capital and individual ART adherence
2. Describe the nature of associations observed between
social structural factors of democracy, HIV
criminalization, wealth disparity, perceived social
capital and individual ART adherence
Freedom to adhere
Explanatory Variable & Results–Democracy
1. Insert tableOverall
here
Site
N
Democracy
(range 1–150)
Political
Rights
(range 1–7)
Civil
Liberties
(range 1–7)
Press
Freedom
(range 0–150)
Corruption
(range 0–149)
Canada
100
8
1
1
16
10
China
107
121
7
6
139
56
Namibia
102
42
2
2
44
40
Thailand
100
84
5
4
99
61
United States
1673
15
1
1
14
17
Puerto Rico
100
15
1
1
14
17
2,182
--
--
--
--
--
Total
World Audit (www.worldaudit.org) data aggregated from: Freedom
House, Transparency International, Amnesty International, Human
Rights Watch, and the International Commission of Jurists
Freedom to adhere
Results–Criminalization, Wealth, Social Capital
Site
N
HIV Criminalization
(# prosecutions)
1. Insert table here
Social Capital
38.1 (British Columbia)
2.50
Canada
100
Disclosure
China
107
Yes, Disclosure
(unk)
41.5
2.54
Namibia
102
No data
(unk)
70.7
2.94
Thailand
California
100
No data
(unk)
53.6
No data
300
Yes
(10)
46.9
2.52
Hawaii
100
No
(0)
42.2
2.65
Illinois
95
Yes
(18)
46.6
2.67
Massachusetts
200
No
(4)
46.7
2.67
New Jersey
100
Yes
(4)
46.4
2.51
New York
100
Other Diseases
(4)
50
2.69
North Carolina
200
Yes
(4)
46.5
2.79
Ohio
150
Yes
(25)
44.8
2.59
Texas
228
Reporting
(22)
47.3
2.64
Washington
200
Yes
(8)
44.4
2.54
Puerto Rico
École des
sciences infirmières
100
No
(0)
54.4
2.73
--
2.51
Total
School of Nursing
2,182
--
(96)
Wealth Disparity
(195)
Freedom to adhere
Outcome Variable & Results
Antiretroviral therapy adherence
• 3-day Visual Analog Scale for Medication
Adherence, mean = 89%; median = 100%
• 30-day Visual Analog Scale for Medication
Adherence, mean = 86.8%; median = 95%
Freedom to adhere
Results–Pearson Correlation Analysis
ART Adherence
Variable
3-day
30-day
Binary 30-day
Democracy
.061**
.091**
.043
Political Rights
.054*
.083**
.034
Civil Liberties
.056*
.085**
.039
Press Freedom
.059*
.089**
.041
Corruption
.074**
.109**
.053*
Gini – Wealth Disparity
.061**
.098**
.080**
HIV Prosecutions
.085**
.122**
.084**
HIV Transmission Law
.085**
.113**
.076**
Same Sex, Sex Criminalized
.082**
.102**
.119**
HIV Sentencing Enhanced
.085**
.122**
.086**
HIV Disclosure Law
.089**
.127**
.085**
HIV Reporting Law
.089**
.121**
.088**
Note: ** p<.01 (2-tailed), *p<.05 (2-tailed)
Freedom to adhere
Results–Regression Analysis
Variables associated with ART adherence
(F=132.05, p<0.01, adjusted R2=0.56)
• Overall democracy ranking
• HIV criminalization (e.g., HIV specific
enhancements for other crimes, HIV reporting
laws), and number of HIV-related prosecutions
• Total social capital score
Controlled for site, gender, age, time since HIV
diagnosis, and adherence self-efficacy
Freedom to adhere
Summary of Findings
PLHIV living in more democratic societies who
are politically free are more adherent than
those in less democratic and politically unfree
societies
PLHIV living in jurisdictions where HIV is
criminalized were less adherent than those
living where criminalization is not a threat
PLHIV with more social capital were more
adherent than those with less social capital
Freedom to adhere
Limitations
• Large number of surveys from U.S.
• Non-random recruitment may introduce bias
• Self-report survey data collection and lack of
biological markers of adherence
• Use of U.S. Census bureau ancestry
(race/ethnicity) categories complicates
interpretation of international samples
• Challenge obtaining accurate and current legal
and policy information related to HIV
Freedom to adhere
Conclusions
Our results demonstrate interconnectedness of
political, social and biomedical spheres in
addressing PLHIV health care needs
Decontextualized biomedical advances and
models of intervention efficacy are insufficient
for future HIV management
Our results provide evidence for the importance
of using intersectoral human rights based
approaches to the management of HIV and its
intersecting vulnerabilities globally
Freedom to adhere
Research Aim 3: Recommendations
Policy
• Abide by 2012 Oslo Declaration on HIV criminalization
• Adhere to 2012 Washington, D.C. Declaration to turn
the tide on HIV and end the AIDS epidemic
• Work with communities to address structural factors
and “make the law work for the HIV response”
Practice
• Inform health care providers about their legal
obligations in contexts of HIV criminalization
• Collaborate to reduce the harms caused by structural
factors and address human rights violations
Freedom to adhere
Research Aim 3: Recommendations
Research
• Study multi-level effects of structural factors
influencing health outcomes among PLHIV and
other vulnerable groups
• Determine baseline knowledge of HIV
criminalization among health care workers,
patients, and communities
• Develop strategies to intervene in contexts where
structural factors may influence HIV prevention
Freedom to adhere
Members of the International HIV Nursing Research Network
Allison R. Webel, PhD
Case Western Reserve University
Carol Dawson Rose, PhD
Mallory Johnson, PhD
Carmen Portillo, PhD
University of California, San Francisco
William L. Holzemer, PhD
Lucille Eller, PhD
Dean Wantland, PhD
Rutgers College of Nursing
Wei-Ti Chen, DNSc
Yale University
Lynda Tyer-Viola, PhD
Inge B. Corless, PhD
MGH Institute of Health Professions
Marta Rivero-Mendez, DNS
University of Puerto Rico
Patrice Nicholas, DNSc
Brigham and Women's Hospital
Kathleen Nokes, PhD
Hunter College, CUNY
Jeanne Kemppainen, PhD
University of North Carolina, Wilmington
Scholastika Iipinge, PhD
University of Namibia
Kenn Kirksey, PhD
Seton Family of Hospitals
Puangtip Chaiphibalsarisdi, PhD
Suan Sunandha Rajabhat University
Joachim Voss, PhD
University of Washington
Freedom to adhere
Acknowledgements
This project was supported in part by:
NIH UL1 RR024131; NIH T32NR007081; NIH KL2RR024990; NIH R15NR011130;
International Pilot Award, University of Washington, CFAR;
University of British Columbia, School of Nursing, Helen Shore Fund;
Duke University, School of Nursing, Office of Research Affairs;
Rutgers University, College of Nursing; and
City University of New York.
These funding agencies had no role in the study design; in the collection, analysis
and interpretation of data; in the writing of the report; or in the decision to submit
the paper for publication
Freedom to adhere
Conflict of Interest Statement
• None to declare
• The contents of this paper presentation are solely the
views of the authors and do not necessarily represent
the official views of the funding agencies
• These funding agencies had no role in the study
design; in the collection, analysis and interpretation of
data; in the writing of the paper presentation; or in the
decision to submit the paper for public presentation
Freedom to adhere
Merci, bonne journée!
J. Craig Phillips
Craig.Phillips@uottawa.ca
Freedom to adhere
Selected References
Bourdieu, P. (1985). The forms of capital. In J.G. Richardson (Ed.), Handbook of theory and
research for the sociology of education (pp. 241-58). New York, NY: Greenwood.
Bourdieu, P. (2001). The forms of capital. In M. Granovetter & R. Swedberg. (Eds.), Sociology of
economic life (2nd ed., pp. 96-111). Cambridge, MA: Westview Press.
Center for HIV Law and Policy. (2012). Ending and Defending Against HIV Criminalization: A
Manual for Advocates (2010). Retrieved from
http://www.hivlawandpolicy.org/resources/view/564
Coleman, J. (1988) ‘Social Capital in the Creation of Human Capital’, American Journal of
Sociology, 94 (supplement): 95–120.
Global Commission on HIV and the Law (2012). Risks, Rights & Health. United Nations
Development Programme: New York. Retrieved from
http://www.hivlawcommission.org/resources/report/FinalReport-Risks,Rights&Health-EN.pdf
GNP+. (2010; http://www.gnpplus.net/criminalisation/). Global Criminalization Scan. Retrieved from
http://www.hivpolicy.org/Library/HPP001825.pdf
Helliwell, J., & Putnam, R. (2004). The social context of well-being. Philosophical Transactions:
Biological Sciences, 359(1149), 143501466.
Hsieh, C. (2008). A concept analysis of social capital within a health context. Nursing Forum, 43(3),
151-159.
Kawachi, I. (1999). Social Capital and Community Effects on Population and Individual Health.
Annals of the New York Academy of Sciences, 896(Socioeconomic Status And Health In
Industrial Nations: Social, Psychological, And Biological Pathways), 120-130.
Freedom to adhere
Selected References
Lazzarini, Z., Bray, S., & Burris, S. (2002). Evaluating the impact of criminal laws on HIV risk
behavior. The Journal of Law, Medicine & Ethics, 30(2), 239-253.
Onyx, J. & Bullen, P. (2000). Measuring Social Capital in Five Communities. Journal of Applied
Behavioral Science, 36(1), 23-42.
Phillips, J. C. (2011). Antiretroviral therapy adherence: Testing a social context model among Black
men who use illicit drugs. Journal of the Association of Nurses in AIDS Care, 22(2), 100-127.
doi: 10.1016/j.jana.2010.07.008
Pitkin Derose, K., & Varda, M. (2009). Social Capital and Health Care Access. Medical Care
Research and Review, 66(3), 272-306.
Portes, A. (1998). Social Capital: Its Origins and Applications in Modern Sociology. Annual Review
of Sociology, 24(1), 1-24. doi: doi:10.1146/annurev.soc.24.1.1
UNAIDS. (2010). Making the law work for the HIV response: A snapshot of selected laws that
support or block universal access to HIV prevention, treatment, care and support. Author,
Geneva.
Webel, A.R., Phillips, J.C., Dawson Rose, C., Holzemer, W.L., Chen, W-T., Tyer-Viola, L., . . . Voss, J.
(2012). A Description of Social Capital in an International Sample of Persons Living with
HIV/AIDS (PLWH). BMC Public Health, 12, 188. doi: 10.1186/1471-2458-12-188 (URL
http://www.biomedcentral.com/1471-2458/12/188).